Anxiety and TS

[Guest Diane]

I just noticed NancyE's post wondering about anxiety as her biggest current dilemma with her sons TS, and I wanted to respond. Anxiety is the biggest symptom I have had to deal with in regards to my sons and their TS. The older one's anxiety is performance-related (whenever he has to perform or speak in front of a group), and the younger one catastrophizes everything, and expects the worst. I have been dealing with this for years. I have obtained excellent cognitive therapy for both boys, and while the doctor was superb (I used her techniques to help myself!), the boys were a little on the young side to really successfully use her cognitive methods on their own. However, I use her methods with the children on a daily basis.

 

My suggestion is to be very patient, constantly encouraging, and use some of the cognitive methods (i.e. what's the best that will happen? What's the worst that could happen? And what's the most likely to happen?) with each situtation. Praise them with every step they make to overcome an anxious situation (i.e.: see! You did it! You survived just fine!). Use humour, if your child responds well to humor. With my youngest child, it got so bad he was afraid that when I dropped him off to school in the morning, I would die in a car crash before I was able to pick him up again at lunch. He did not want me to go anywhere without him. When I dropped him off, he obsessed at school over whether or not I was at home. I took it very, very slowly. Each time I had to do something, I told him when I would be going and when I would be back. Over time, he saw that I was always there to pick him up. We discussed alternatives if, say, my car broke down and I was late (very terrifying to him, but he at least had a little strategy. Cognitive therapy teach that you employ strategies to deal with your anxiety, to lessen it). My son loves humour and loves to laugh, so I used a great deal of humor where I showed him the silliness of his anxiety (not to make fun of it, but to learn to laugh at it), and he responded positively and learned to laugh at how he would blow things out of proportion. This significantly reduced his anxiety, as he would employ this method on his own whenever he felt anxious, he would remember the joke we made about it, and the anxiety would disappear or greatly lessen. It takes time to find what works best for your child. It was a day to day effort, literally, but it paid off.

 

My son has improved dramatically with my slow, patient work. I never would have thought we would have emerged from that time, but we have. The TS doctor said his anxiety will wax and wane like other symptoms, and told me he would get better, but it was so bad I really wasn't sure. But it's true - although as the doctor told me, your child may never lose all his anxiety completely (which is certainly true in our case), it has been reduced to a manageable level for him and I. Good luck.

Diane

[Guest Stacy Carrasco]

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[Guest Stacy Carrasco]

Sorry, didn't know if it was going to work without registering. I have to agree that anxiety has been one of the biggest we are trying to overcome. Anything triggers my son (10 yo), including schoolwork. He is homeschooled right now, and not really by choice. We live in DC and the schools in our area just aren't nearly good enough academically, or for special needs. Anyway, math seems to be the worst triggering subject, and his tics are off the wall when we have to do math. I think it's just because he actually has to challenge his brain to get through it. Another big trigger is being out in public. The more people stare, the worst his tics get. And I'm kind of at a loss as to what to do for that. I almost feel like I should just announce that my son has TS so they'd stop staring at him and he can get his anxiety to a manageable level. Has anyone else dealt with this? Any suggestions?

[Guest Diane]

Stacy,

My kids have not exactly had the same problems as your son specifically, although tons of repetitive homework will undoubtedly result in angry melt-downs by both my boys. I have already told the school I will no longer let them do repetitive homework to that point. If they understand the concept and practice it a few times, that is as much as I am going to push them, unless they want to do more. If math causes your son explosive tics, I would keep the lesson very abbreviated and not push him. I would not ever force my child to do anything that caused explosive tics, including math. At some future point his tics will probably improve enough that you could then tackle math, slowly to see how he reacts.

 

In regards to tics in public, my personal feeling (although this is a personal thing and not everyone may agree), is that stating to strangers that my child has TS would probably make my child feel more "different" than they already feel. My kids want to be like every other kid. So they have learned various tricks to disguise their tics (i.e. a humming tic - can hum along with background music in a grocery store - that type of thing) that work quite well (remember how Michael J. Fox said he had thousands of little disguising tricks to hide his symptoms of Parkinsons?) This is not to be ashamed of their disorder, but they would like to feel and be seen like other people without the disorder. This is not always possible and there may always be the time where ignorant people will stare. My husband lived through it (rude stares and comments due to his tics) and believe it or not, it made him a stronger person. I always worry about what other people think. He NEVER worries about what other people think! In fact, he seldom worries. When I asked him why he doesn't worry, he told me he'll worry when there's something to worry about!!

Diane

[wiz_ace]

Diane,

 

Thanks for the support . Unfortunately, my son's tics are much more than the tics most other kids with TS can hide. He stomps while he is walking and hits himself in the chest, while making a loud, gruntlike vocal tic. I think if he had just one of those tics at a time, it wouldn't be a big deal. But it's very noticeable and frequent enough to cause the stares. We've tried lots of methods to get them to a more manageable level, but nothing seems to be working for us. I am considering getting him on Orap, though I wish I didn't have to. Anyway, that's my story thus far.

[Chemar]

Hi Diane Hi Stacey

 

Stacey, I just wanted to encourage you as my son, now 15, had very very severe TS when he was 10-11. It was debilitating as his tics were multiple and intense and frequently caused him injury. It was compounded by severe OCD too.

 

We did try a variety of medications for a year, and that only made things worse as it caused so many side effects that were actually worse to deal with than the tics.

 

We had a steady progress once we started alternative treatments, as I have documented here

http://www.latitudes.org/forums/index.php?...p?showtopic=687

 

My son now has tics that are so mild that many people dont even realise he has TS and his OCD is negligible. His overall health is excellent and he is a happy, well adjusted kid with many friends and talents.

 

PLEASE document here what you have already tried and we will try to guide you.

Going on to the neuro meds is a major decision, and truly worth avoiding until you have exhausted all other possibilities

[Claire]

Stacy,

 

I wanted to echo what Chemar said. The vast majority have found tremendous improvement without meds. If he is homeschooled, you even have some 'advantages' in that you can control his environment.

 

Have you read through the links on this site? I encourage you to read the thread that Chemar posted just now, plus these 3 threads...

 

List of doctors who will try to treat this without meds.

http://www.latitudes.org/forums/index.php?...p?showtopic=565

 

The next two threads show our own 'statistics' on common things that can help reduce tics pretty quickly.

 

1. Eliminating certain foods can reduce tics:

http://www.latitudes.org/forums/index.php?...p?showtopic=794

 

2. The recommendation on last thread, if followed, has an excellent shot at having your son see a major reduction in tics in a week without tests, supplements or diet change. If this works for him, this success might give you the encouragement to see that you can do this without meds. People have seen even severe tics reduced to minor ones by trying this week of 'no screens'. It isn't a life long elimination--it is just a diagnostic and a mechanism to help give you peace of mind while you have time to pursue the longer term healing of the immune system that is documented on this board and that seems to be so helpful to so many who have come here.

 

http://www.latitudes.org/forums/index.php?...p?showtopic=852

 

Claire

[wiz_ace]

Hi Claire and Chemar! I actually have been reading this discussion board for quite some time now, looking for solutions. It is Chemar's list of vitamins that got us interested in trying this method, although we didn't begin until the tics were very severe. We've been on the Bonnie G program since Jan. 4, and the tics I described above are still there. He doesn't have any food allergies, although we just found that he has an aversion to chocolate, which he doesn't like to eat anyway. I don't know how long to wait to see improvement with the vitamins, but I did read that some people took 2-3 months to see a change (with a little bit of tailoring the vitamin amounts). I don't mind making him take the vitamins as it really can only do him good. We tried the "no screens" and saw only a slight improvement (We did this for about 2 1/2 weeks). The neurologist says that the tics are going to be the worst between the ages of 10-11, and he just happened to turn 10 on the 3rd. He is also against medicating, until we get to the point where the tics become debilitating and as a last resort. I think we are at the last resort, and so that's why we are seriously considering the Orap. I am just hoping that we only have to be on it for a short period of time, until maybe his hormones slow down a bit, as it seems to us that this is the main cause of the onset of the severe tics. In any case, do you two have any advice as to what to do about the stares in public? It's a vicious cycle for him because the more people stare, the worst his tics seem to get, and like I said, they are already very noticeable. Any suggestions would be greatly appreciated.

[Chemar]

Hi Stacey

 

yes, the prepubertal hormones do seem to get the tics going, but I assure you, the meds also dont always go well with the hormones and then you have a really bad cycle going on! These medications have LONG TERM side effects, and even being on them for a short time can leave long lasting unwanted results. Please understand, I am speaking from deep and painful experience here. Yes, some people do ok on the meds.......but I truly think that for children, the stats would show that more react negatively than positively.....that is just my own, unqualified opinion based on the feedback I have.

 

Bonnie's supplements are excellent and have helped many people but some people just do not react well to them for reasons that remain a mystery. those same people then begin their own supplement program and do wonderfully! So do consider that before you give up on vitamins.

 

Also, if underlying things like pyroluria or yeast or mercury etc are at work, then the supplements also do not have the full benefit. Once again, the experience of many people on this and other boards clearly shows this.

 

 

It is VERY hard on a child when people are rude enough to stare at them when they tic. I know just how it breaks your heart to see your child go through that.

My son would stare right back, or, if it was a situation that warranted it, would simply say outright....." I have Tourette Syndrome, and it makes me twitch or make sounds" and leave it at that. Most people have the grace to feel ashamed when confronted that way. There will always be insensitive people tho and so sadly but truly, your son is just going to have to develop a resilience and a "dont care" approach. Most people who live successfully with TS have had to learn to do that.

 

Stacey, pleace dont give up yet! If you feel Bonnie's plan isnt working, start putting together your own supps like I did, and see what results. You dont have to do all at once...start with a good pure multi vitamin/multimineral(high in Bs) along with the calcium/magnesium/zinc combo and an essential fatty acid combo (no fishoil if your child is sensitive to it....many people have found they tic more from fishoil and so use the flaxseed, borage, evening primrose combos instead.....if no sensitivity, then fishoil combined with the plant oils is best for a balance)

 

See how it goes on that for a few weeks.

 

Then you can gradually add any of the other things one at a time and see the effects.

 

Please feel free to PM me if you want more one on one discussion on all this.

 

(((HUGS))))

Cheri